Here we go again... back to square one?

[JuliaJambo]

I have finally been referred to a Gynaecologist and after a few months on the waiting list, I was able to have my consultation in February this year. As my endo symptoms are under control (no coil, no hormones, just taking phototherapy), we agreed on just having regular ultrasound scans every 3 months to check if the cyst is growing.

However, my latest consultation was cancelled and now I have moved to another city. It is taking ages to have a GP appointment, and I will probably have to go all the way again being referred to a gynae and having my exams again. This is really overwhelming as it makes you waste time and go back to square one. I feel like I am abandoned.

Have anyone had a similar problem when moving out from your city? Would you advise trying a private consultation and scan as an alternative?

Thank you

[Violet159]

I've also had to move, and I know exactly how you feel - completely forgotten about. I was supposed to have a laparoscopy in March which was cancelled for Covid, and I just finished university and now I'm no longer getting student funding and am unable to work because of my symptoms I could not afford to keep living in my student city and had to move in with my parents. I've been trying to fight this for months. I firstly tried to stay with the original hospital I was with but because it's in Scotland and I'm now in England it could not be done for funding reasons. I'm having to start from square one, from GP referral to gynaecology, on the very bottom of what is now a very long waiting list. In my mind, I've already waited a long time (since May 2019) and had surgery cancelled so like everyone else in this situation should have it rescheduled, but as I'm a new patient at this hospital I get treated as a new patient. Theres a 12-18 week wait for the consultation and at least 18 months for the surgery. I was just 4 days away at my last hospital!

Obviously this is really unfair so I'm still pushing to be seen faster, but it's not an easy ride. My GP is pushing for me, I've been in touch with the ombudsman and my local MPs office is also helping but it's a very long and awkward process. The problem is that my previous hospital is no longer responsible for me because I no longer live in their area, but my new hospital isn't responsible for my previous long wait so isn't technically at fault either. It's just horribly unfair on us! I sadly can't afford private care but if theres a long wait for you and you can afford to go private I recommend it as what I'm going through now is very stressful.

Although you could try asking your GP when you do get through if they can refer you straight for a scan just to check up on your cyst, I think given your circumstances and how long you may be waiting to see a gynaecologist any reasonable GP would consider it. Try pushing your GP for an earlier appointment if you can; really stress how important this is to you. You should also be able to ask your previous consultant to hand over everything properly to the new hospital; they should be able to write a letter detailing all the tests/exams you've had done already so you don't have to repeat them all, and they can pass on the images from your previous scans through a portal. This is what my last hospital have done. Ask your new hospital (as soon as you know where your going) for the relevant address/contact details and pass them on to your last hospital so they can transfer you more smoothly.

I hope this information is helpful, I have so much sympathy with what your going through and I really hope you can get seen soon xx

[JuliaJambo in reply to Violet159]

Hi Violet. thank you so much for sharing this with me. I am really sorry for your pain and hope you can get better soon. I hopefully will have an online GP consultation and I will make sure to stress the issues, hoping he will refer me. I moved inside Scotland but still seems that are a lot of obstacles.

Thank you so much, your information are really helpful. I hope your next consultation and surgery can be as soon as possible.

[Jessica-x]

Can you request your medical notes and scans? So you can take them with you to to your new consultant once you have been refereed just so you don’t have to start back at square one again?

Private is always a good idea for your first initial consultation as it does speed things up quicker and then you could go back on to the nhs for any scans, ops, or procedures you may need? But that would have to be finding a consultant in a hospital near by you first that does the private consultations so then you could flip back onto the NHS if necessary?

Sorry I hope this makes some sort of sense.. post night shift typing isn’t always the best!😅

[JuliaJambo in reply to Jessica-x]

Thank you Jessica. I will try to have everything set up and see how long is the waiting list.

[Jessica-x]

Good luck, will keep my fingers crossed for you 🤞🏽let us know how you get on!

[MellMelly]

Hi, I'm also in the same boat.

I had laproscopy surgery in october last year and I was supposed to have an appointment for a checkup to see how the surgery went and I had to cancel due to moving from london to newcastle. Now I've re-registered I have to wait to be referred, and it's been months.

I ended up in A&E where they scanned me and told me the results, unfortunately bad news!

I'm definitely considering private consultation which will probably cost a bomb!

I hope you've managed to get a referral, I think my best advice is constant visits to the gp until they take you serious, because in my opinion they arent fully aware of endometriosis, especially when we're the ones teaching them what it is.

X

[JuliaJambo in reply to MellMelly]

Hi, thank you for sharing.

I haven't received the confirmation yet but the GP referred me to the hospital. I hope you can also get a referral asap. Can you try to change your GP for one that would refer you?

X

[JuliaJambo]

Hello. Thank you all for the support. I've managed to have a phone consultation with a GP and she said she will refer me to the gynaecologist. It will probably take long, so I asked her to also prescribe me a new ultrasound. I hope I can manage the symptoms until I get to see the specialist.

x